Being diagnosed with a serious illness, such as cancer, heart failure or Alzheimer’s disease, presents an ever-growing — and ever-changing — host of challenges that go far beyond what shows up on an X-ray or MRI. That’s where palliative care fits in. Palliative care is a specialized type of medical care that focuses on patient and caregiver quality of life. The goal is to help people deal with the many burdens that can come with a disease and its treatments, including pain, nausea, worry, anxiety, financial struggles, having to cut back hours at work and needing help with child care.
Palliative care is provided by a team that typically includes a physician and/or nurse, as well several other providers, like social workers, chaplains, psychologists and others. Along with addressing symptoms and concerns, that team can also facilitate communication between providers and help coordinate your care.
“We give an extra layer of support to make sure those patients can live the best they can with their illness,” explains Dr. Andrew Esch, palliative care medical education consultant for the Center to Advance Palliative Care and a palliative care specialist in Buffalo, New York.
We give an extra layer of support to make sure those patients can live the best they can with their illness.”
DR. ANDREW ESCH, PALLIATIVE CARE MEDICAL EDUCATION CONSULTANT
Palliative care — also sometimes called “supportive care” — addresses any and all symptoms, physical, emotional, financial, psychological and more, that cause suffering for a person with a serious illness.
It is not the same thing as end-of-life or hospice care, which is a specific type of palliative care that typically starts only when someone has six months or less to live. The big difference: Palliative care can be given simultaneously alongside curative or targeted medical care — so you can still receive it while undergoing chemotherapy to treat cancer, for example. “We can operate side-by-side,” Esch says.
Some of the symptoms and struggles the team can address include:
- Pain.
- Nausea.
- Vomiting
- Constipation.
- Sleeplessness.
- Fatigue.
- Anxiety.
- Depression.
- Caregiver burnout and support.
- Trouble paying medical bills or other financial difficulties.
- Unmet need for medical equipment (such as a wheelchair or hospital bed in the home).
- Unmet spiritual needs.
Who can and should get palliative care
Anyone who has been diagnosed with a serious illness is a candidate. There’s no specific age range, disease stage or other criteria that need to be met.
There’s also no specific list of diseases that warrant a palliative care team being brought in, Esch adds: “Essentially though, serious illness is anything that can or will ultimately be something you die from or is going to severely impact your quality of life.”
Some of those diseases or conditions can include:
- Amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease).
- Alzheimer’s disease.
- Cancer.
- Chronic obstructive pulmonary disease (COPD).
- Congestive heart failure.
- Dementia.
- HIV/AIDS.
- Huntington’s disease.
- Kidney disease.
- Parkinson’s disease.
- Pulmonary fibrosis.
- Sickle cell anemia.
- Stroke.
Children with serious illness can also get palliative care. Their needs are of course somewhat different than adults, but the fundamentals are the same. As with adults, good palliative care for children should help treat symptoms and side effects, address psychological and psychosocial problems, and assist with the logistics of scheduling and receiving medical care. The sooner a person with a serious illness starts working with a palliative care team the better to help eliminate as much unnecessary pain and suffering as possible.
Where to receive palliative care
You can receive palliative care at home, in hospitals, in doctors’ offices and other places, depending on what type of help you need and where you’re getting medical treatment.
If you live near and receive care at a larger hospital or clinic, palliative care might be given there, with all the services you need (doctor, social worker, psychologist, chaplain and more) available under one roof. But it might also be an option for the palliative care team to come to you where you live (at home, in a nursing facility, or in a senior community), so that you receive some or all of your palliative care at home. And if the care you need actually involves your home — if you need special medical equipment installed at home, for example — or if you are homebound because of your illness, that care will also happen at home.
In more rural areas a palliative care team may be smaller, but will connect you to other specialists in the community to get the help you need. Palliative care is a growing field, so more and more services are becoming available in more areas, but some are still limited. As with a larger team, you might receive services in an office or clinic or you might get palliative treatment at home when it’s appropriate. If you are hospitalized because of your illness, the palliative care team may come to you and address your needs in the hospital.
How to find a palliative care provider
If you think you or someone you know might benefit from palliative care, a good first step is to talk to your physician or medical provider, who can refer you to a team near you. Palliative care is a medical subspecialty in the same way that cardiology or oncology is a medical subspecialty. Once you’re referred for care, the services you receive get billed to your insurance in the same way that other medical services would. Most insurance plans, including Medicare and Medicaid, cover all or part of your palliative care services.
“That’s really what we’re in the business of doing — taking that burden and worry off of patients.”
DR. ANDREW ESCH, PALLIATIVE CARE MEDICAL EDUCATION CONSULTANT
If you have financial concerns about paying for the care you receive, Esch suggests reaching out to the palliative care team anyway, who should be able to help you address those concerns. “That’s really what we’re in the business of doing — taking that burden and worry off of patients,” he says. “Anyone who’s thinking about it, just reach out and we’ll help make it easy for you.”
If you are having trouble finding a palliative care team, you can also check Get Palliative Care to look up a provider in your area.
